Hi all, I’m Rhonda, 37, live in Colorado, married, 3 kids, work at home as a med transcriptionist – which is the best job ever for someone with this condition! I was diagnosed with UC eight years ago when I was pregnant with my son. What a horrible pregnancy that was. I was so sick, and my OB thought it was hemorrhoids or something. No one listened to my claim that I was going to the bathroom 60+ times a day, often times just to expel blood. On a Friday I was emergently referred to a gastro, but that weekend I had my baby three weeks early. He was fine – thank God. Right after he was born I was started on lots of meds. Can’t remember them all or proper spellings, but high doses of prednisone, Asacol, Pentasa, Rowasa all rotated around. Lots of them had some form of ‘ass’ in the name which I still find ironically funny. Proof that some scientists must have a silly sense of humor. I went into remission and we all hoped it was a pregnancy thing.
I wanted another baby (had to try for my girl!). The GI thought it would be fine to go for it since I was doing so well. About as soon as the pregnancy test came back positive I started to flare up again. I ended up getting very, very ill. It was hard because I was pregnant and my GI was unsure about meds. Finally in the hospital my mom pulled the mother scene from Terms of Endearment
and my OB raised holy Hell. I ended up with a central line, morphine drip, tube feedings and every kind of medicine they could throw at me. One night I could not make it to the bathroom trying to lug all the IV’s and I made a mess on the floor. I was mortified and just sat on the bed crying while the nurses cleaned it up. It was one of the worst moments of my life. They started me on Remicade and it was a miracle drug for me. I started improving within days. I still don’t understand why they didn’t just do that at the beginning. After five weeks of being in the hospital my baby girl was safely induced five weeks early. She was completely fine! It was a miracle. She has always been very mellow – we wonder if it was all the morphine she had inutero. :lol
So that was almost six years ago. We decided I would not have any more children. The docs thought it was just a pregnancy thing so I stopped the Remicade. I’ve been flaring off and on since then. It’s been flaring more and more lately. I can’t take prednisone anymore because I now have bone loss. I can’t take Remicade anymore because of the antibody worry. So I just started Humira last week. I’m scared about the Humira. I’ve had pneumonia and shingles which the docs think is largely due to my Imuran and the compromised immune system that causes. I really worry about the Humira compromising my immune system further. I am room mom to both of my younger kids so I’m around a lot of children and their germies, but I have to live my life, and doing those things bring me joy. So I am praying this is my answer. I’m day 5 after my loading doses. I was feeling awful after I started my doses, which worried me, but I’m doing better now. I don’t know if it’s really helping because I was already coming out of a bad flare-up on my own. So I don’t know if it’s the med or just me. Today is a bad day though.
One weird thing. When I was 18 I had horrible ulcerations in my mouth. Like a hundred. It was awful. I had no medical insurance and never had a diagnosis. This lasted on and off for about a year. Then I got pregnant and it went away! It would occasionally flare up when I was getting sick, but I have never had a severe recurrence. I am pretty convinced that whatever it was is related to what’s now going on ‘down there’. When I mention it to the doctors, they are just like… ‘huh…that is weird!’. Nice. I am extremely leery of surgery, because I believe if I remove the diseased part, it will just attack something else in my digestive tract, which is not indicative of UC from what I can gather. I think I am a hybrid of muckery. Lol
Well, this is really long. I don’t know if anyone will get through it. Ha. It’s the first time I have ever written down anything like this. I am sorry you all are going through this, but I can’t tell you what a weird/sad/wonderful feeling it is to know that there are others like me out there. God bless you all – I’m praying for a cure so that our future generations don’t have to ever deal with this kind of crap. Ha…crap… I made a funny.
Rhonda
I wanted another baby (had to try for my girl!). The GI thought it would be fine to go for it since I was doing so well. About as soon as the pregnancy test came back positive I started to flare up again. I ended up getting very, very ill. It was hard because I was pregnant and my GI was unsure about meds. Finally in the hospital my mom pulled the mother scene from Terms of Endearment
and my OB raised holy Hell. I ended up with a central line, morphine drip, tube feedings and every kind of medicine they could throw at me. One night I could not make it to the bathroom trying to lug all the IV’s and I made a mess on the floor. I was mortified and just sat on the bed crying while the nurses cleaned it up. It was one of the worst moments of my life. They started me on Remicade and it was a miracle drug for me. I started improving within days. I still don’t understand why they didn’t just do that at the beginning. After five weeks of being in the hospital my baby girl was safely induced five weeks early. She was completely fine! It was a miracle. She has always been very mellow – we wonder if it was all the morphine she had inutero. :lolSo that was almost six years ago. We decided I would not have any more children. The docs thought it was just a pregnancy thing so I stopped the Remicade. I’ve been flaring off and on since then. It’s been flaring more and more lately. I can’t take prednisone anymore because I now have bone loss. I can’t take Remicade anymore because of the antibody worry. So I just started Humira last week. I’m scared about the Humira. I’ve had pneumonia and shingles which the docs think is largely due to my Imuran and the compromised immune system that causes. I really worry about the Humira compromising my immune system further. I am room mom to both of my younger kids so I’m around a lot of children and their germies, but I have to live my life, and doing those things bring me joy. So I am praying this is my answer. I’m day 5 after my loading doses. I was feeling awful after I started my doses, which worried me, but I’m doing better now. I don’t know if it’s really helping because I was already coming out of a bad flare-up on my own. So I don’t know if it’s the med or just me. Today is a bad day though.
One weird thing. When I was 18 I had horrible ulcerations in my mouth. Like a hundred. It was awful. I had no medical insurance and never had a diagnosis. This lasted on and off for about a year. Then I got pregnant and it went away! It would occasionally flare up when I was getting sick, but I have never had a severe recurrence. I am pretty convinced that whatever it was is related to what’s now going on ‘down there’. When I mention it to the doctors, they are just like… ‘huh…that is weird!’. Nice. I am extremely leery of surgery, because I believe if I remove the diseased part, it will just attack something else in my digestive tract, which is not indicative of UC from what I can gather. I think I am a hybrid of muckery. Lol
Well, this is really long. I don’t know if anyone will get through it. Ha. It’s the first time I have ever written down anything like this. I am sorry you all are going through this, but I can’t tell you what a weird/sad/wonderful feeling it is to know that there are others like me out there. God bless you all – I’m praying for a cure so that our future generations don’t have to ever deal with this kind of crap. Ha…crap… I made a funny.
Rhonda
